Stormie Jones, 13; Transplant Pioneer

Stormie Jones, the freckle-faced Texas girl who loved scary films and Gothic novels and who was only 6 when she received the world’s first simultaneous heart-liver transplant, died Sunday. She was 13.

She died at Children’s Hospital in Pittsburgh, Pa., where she had been flown from her home in the Ft. Worth suburb of White Settlement late Saturday after complaining of flu-like symptoms. Her mother, Lois, accompanied her.

“Things happened with incredible speed,” hospital spokeswoman Lynn McMahon told the Associated Press. Her symptoms at first did not appear to be life-threatening, McMahon said.

An autopsy will be performed to determine the cause of death.

Stormie suffered from a rare genetic condition that elevated her cholesterol level 10 times above normal. At the time of the unprecedented operation, she had already undergone double-bypass surgery, making her heart too weak to withstand a liver transplant. In a widely publicized 16-hour operation on Feb. 14, 1984, Stormie received the heart and liver of a 4-year-old New York girl who had died three days earlier in a traffic accident.

Two other heart-liver transplants were performed at the Pittsburgh hospital the following year, but both patients died within a few days of surgery.

Within a month, Stormie resumed a fairly normal life, even eating an occasional hamburger and hot dog, although her diet was mostly restricted to vegetables and skim milk.

Until her death, Stormie took the experimental anti-rejection drug FK506, which has been approved for testing exclusively at the University of Pittsburgh. A few exceptions have been made for patients elsewhere.

Last February, after hepatitis damaged Stormie’s liver, she returned to Children’s Hospital for a second transplant. In July, she was treated for hepatitis, but a third liver transplant was deemed unnecessary.

Stormie recently said she was working on an autobiography tentatively titled “In the Darkness.”

She said it was “about my life, my family, all the pet animals I’ve had” and about her lifelong fascination with frightening books, movies and television programs.

“With Stormie’s death, the world has lost a treasured friend,” said a hospital statement. “She was an inspiration to children and adults alike. Her courage, her tenacity and her freckled face will long be remembered. The world loved Stormie in life, and will miss her dearly in death.”